Happy Fourth Of July

RA Guy Adventures of RA Guy

July 4

Rheumatoid Arthritis Guy has had a busy week. Bingo. Walking in the woods. Asking for help. Canes and crutches. Roller coasters. I’ll be taking today off in observance of the United States’ 233rd birthday. Here’s hoping that all the fireworks today are outside of the body, and have nothing to do with rheumatoid arthritis! I’ll be back tomorrow.

ProAesthetics

RA Guy Adventures of RA Guy

“This is just the first step towards a revolution on how we perceive the sanity and insanity of the human body and the artifacts of illness.”

-Francesca Lanzavecchia, Italian Designer

ProAesthetics

ProAesthetics
Francesca Lanzavecchia
www.francesca.nu

This is the first inspirational publication that present disability artifacts in a new light. It is a bridge between user and producer aiming to open their eyes to the possibilities and new values that these vital body accessories can bestow upon the user. Here disability aids become a stage to discuss, understand and cope with disability, illness and human frailty.

ProAesthetics Canes

Left to Right: ‘Tea Time’ Cane, ‘Protraction Crutch’, and ‘Bone’ Cane.

Rheumatoid Arthritis Guy went crutch browsing yesterday. In a way, this is testament to how much better I am doing. Just a few days ago, I would have never even  considered the possibility of spending time and energy walking from store to store to look at walking aids.

Granted, I was already in the medical part of town having some lab tests done – but I was able to walk around for quite a few blocks before returning home.

(The thought of looking for new crutches has been on my mind since the end of May, when I saw a guy my age who was using a really nice and sporty pair. I wrote more about this at the time, in Design Meets Disability.)

I found a really cool pair of European style forearm crutches, with a very cool molded design in the handle and arm support area. They were much nicer than any I have been above to find online. (I currently use forearm crutches with a closed cuff, which makes them a little more difficult to slip on and off.)

There were a few different styles in the various stores that I visited. Of course, my favorite pair was also the most expensive pair. Ouch!

But I’ll put this purchase on hold, for the moment. With all of the medical expenses that I continue to rack up on a daily basis, I can’t really justify spending money on another pair of crutches based solely upon their looks. (I can see it now, Carry Bradshaw with her walk-in closet of mobility aids. And that set of Manolo Blahnik $600 crutches? To die for!)

In a way, it’s interesting to realize that my use of crutches has surpassed a level of mere utilitarianism, and has reached a point where they are  just another thing I put on when I get dressed. In a way, they are indeed sort of like a pair of shoes. Something that I wouldn’t think of leaving the house without, and something that I might want to mix and match every now and then.

Deep down in the back of my mind, I still do have the hope of reaching a point where I am able to walk without crutches. But in the meantime, I’ll continue to be happy with the fact that my crutches are a part of who I am. And one day, maybe I’ll just treat myself to a nice new pair.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Breaking The Pride Barrier

RA Guy Adventures of RA Guy

Refusing to ask for help when you need it is refusing someone the chance to be helpful. – Ric Ocasek, musician

Help WantedAsking for help is a touchy subject for Rheumatoid Arthritis Guy. It’s not that I don’t know how to ask for help. Living with rheumatoid arthritis for the past few years has without a doubt shown me that there are some things that are not as easy to do as they used to be.

For me, the difficult part about asking for help is the fear that I may get too dependent upon this support. But, I know that the mere fact that I am aware of this issue is probably the best thing I have going for me, in terms of preventing myself from developing any unhealthy dependencies.

There is always that little voice in the back of my head. “Do it yourself, don’t ask for help.” I must admit, what I am hearing at times is also the voice of others. More than once, I have been told that I should try to do everything on myself without asking for help – no matter what the cost.

Well you know what? I have figured out that sometimes the best thing for me to do at times is to ask for help. I have also learned that while I may indeed be able to do something myself, doing so may actually bring me more pain and cause more harm.

Yesterday, I asked for help in getting dressed. I got out of the bathtub – doing so was slightly more difficult than usual, but my secret twists combined with the built-in grab bars got me back on my feet. I sat on a tall stool as I brushed my teeth and shaved. It was time to get dressed when, out of seeming nowhere, my hands decided to once again go on one of their inflammation-fests. (It’s a good thing it wasn’t a rave, that would have lasted all night.)

As I walked back to my bedroom, I told myself that I had three choices.

The first option was to get dressed right then and there, no matter what the final cost to me was going to be.

The second option was to get in bed under to covers, and wait in bed for the worst to pass – which could be up to an hour. Trust me, I have done this many times in the past…but with lunch waiting to be served, this wasn’t necessarily the best option.

The third option was to ask for help.

I chose door #3.

And within ten minutes, I had all of my braces on, I was fully dressed, and I was sitting at the dining table eating my lunch. (And I was in a slightly sour mood…but it passed soon enough.)

I am glad that I asked for help. When my fingers and wrists get to the point where they were at yesterday, even pulling apart Velcro is painful. (A lot of my braces have Velcro straps.) Sliding elastic bands onto my elbows exerts too much pressure. Come to think of it, even my physical therapist once told me to please ask for help and to not over-exert my hands when they were in such a state.

Asking for help is an interesting topic. I think there is this overwhelming belief in our society that we should be as independent as possible and not ask for help. If we stop and look at things, we ask for help all the time in so many different ways – whether we want to admit it or not.

I visit my psychologist once a week in order to focus on cognitive therapy skills. In a way, I am asking for and receiving help.

I visit my rheumatologist once a week in order to review my disease progression/regression, medicines, and lab tests. In a way, I asking for and receiving help.

But if I need to ask for help in tying my shoelaces or cutting my food, I should feel ashamed? I used to think so, but now I know this should not be the case. I am in a time where my needs are different. At any given moment without rheumatoid arthritis, doing these items would be a breeze. When I am dealing with the symptoms of my illness, they turn into some of the biggest challenges that I encounter. So why not ask for help?

Just as drinking a beer every now and then does not make me an alcoholic, neither does asking for help around the house every now and then make me dependent upon other people.

Only I know when I really need a helping hand. When I reach this point, I will ask for help – without feeling ashamed. I deserve nothing less.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Not Out Of The Woods Just Yet

RA Guy Adventures of RA Guy

“Me thinks that the moment my legs begin to move, my thoughts begin to flow.” -Henry David Thoreau

Rheumatoid Arthritis Guy is coming off the lows that he reached earlier this weekend. What can I say? Living with rheumatoid arthritis can be quite a challenge at times – even for superheroes.

Over the past couple of days things have gotten a little bit better. If we were talking in terms of a percentage, I’d put the improvements at right around 3%. Small, I know. But still – I’m happy. (Things could have gotten worse, after all.)

As should be obvious, I’m not out of the woods just yet.

During some of my roughest moments during these past days – especially when walking was at its most difficult – I often found myself thinking back to a wonderful walk I took this past March.

My nephew and I loaded up or backpacks with a sleeping bags, a couple of cans of food, water, some trail mix, binoculars, and lightweight tent. We drove up to Point Reyes National Seashore in Marin County, parked next to the Bear Valley Visitor Center, and started on our ten mile walk to Wildcat Camp, which overlooks the Pacific Ocean.

Point Reyes
A fallen tree is now the growing grounds for moss and ferns. Our little blue tent, on the cliff overlooking the Pacific. Me and my trusty MBT shoes sitting in front of the tent. Alamere Falls flowing into the beach, located an additional mile past the camp.

The first nine miles were a combination of flat, uphill, and downhill trails through tall redwood trees. The last mile was an open air walk down to the ocean, where our campsite next to the coast waited for us.

My hands and ankles were already not doing too well, although not nearly to the level where they are at now. I had backup plans to go to a campsite that required just a mile walk each way in case I thought I wasn’t going to be able to make the longer walk. But with new Level III ankle supports and wrist guards, I was able to make the ten mile walk. (And more importantly, I was able to make it back the following day!)

I still remember walking for hours on end, one foot appearing in front of the next foot. My nephew and I talked throughout the entire hike. Since it was a weekday, we pretty much had the entire route to ourselves. Occasionally, I wondered what I had gotten myself into – but I continued walking, mile after mile.

As we walked through the woods, we could see the sun poking through the tall canopy of the trees. Even though it was a clear spring day, underneath the trees it was quite dark. The experience of adjusting our eyes to the dimness, only to be shocked when we crossed a ray of light, was something we went through many times that day.

We even passed through a patch of shorter-type trees that had grown so dense, that they formed a dark tunnel. It was amazing to see how little light seeped in through the trees. The temperature dropped considerably, and it felt like we had just walked onto the set of the movie Sleepy Hollow.

At first glance it appeared that there was no life in this “tunnel”, but upon closer inspection we found some small mushrooms growing and lizards walking around. I have no doubt that with lots of time, this stretch will heal and once again be the healthy green area that it once was.

In a way, all of these memories provided me some nice metaphors that I could connect with during these past few days.

Step by step, putting one foot in front of another – no matter how long it took to reach our destination.

Adjusting to the darkness, only to be slightly thrown off guard when an occasional bright point was reached.

Realizing that even though something appears to have reached a point where there is no hope, life will always come back to fill in the void.

I think even further back, to one of my architecture studio projects when I was an undergraduate. We were to design both an outdoor plaza and the entrance to the underground subway station, for a small triangular piece of land in Manhattan.

Plaza Trees
Canal Street Plaza and Subway Station

I slightly tilted the plaza (rolling slope) and filled it with tall poles (trunks) topped with panels of varying transparency and translucency (leaves). These “trees” extend below ground.

As pedestrians walked into the transit station below, light filters through the panels and skylights –  recreating the mood of walking through a patch of redwoods on a sunny spring day. This is just another one of my walks through the woods, but this time it’s imagined.

So I may not be out of the woods just yet, but I’m okay with that.

In the meantime, I’ll continue to walk – either with my feet, or with my mind.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

*****

These look pretty cool! SideStix Sport Crutches: The First Shock Absorbing Sports Crutches with Attachable Feet. They are still in prototype stage, but I hope they come to the retail market soon!